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Improving Post-Discharge Care of High-Risk Infants

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Duke Health News 919-660-1306

One in eight babies in the United States is born early. Even
after they leave the hospital, many of these premature infants
face serious, ongoing health problems. A new program aims to
help health care professionals improve care for "preemies" once
they're back home.

Thanks to advances in treatment and technology, doctors are
saving more premature infants, at younger ages, than ever
before. But these "preemies" often have serious, ongoing health
problems after they come home from the hospital.

Dr. Ricki Goldstein, a neonatologist in the Department of Pediatrics at
Duke University Medical Center, heads a program to help
pediatricians and other community care providers enhance
post-discharge care for these tiniest patients.

"Two years ago we received a grant from The Duke Endowment to
create an educational program for well-child care providers,
pediatricians, family practitioners, nurse practitioners, as
well as community interventionists who provide therapies to
high-risk infants," says Goldstein, who serves as director of
the Special Infant Care Clinic at Duke.

"The program is designed to teach them specifically about
the post-discharge care of high-risk infants, in particular
premature infants. We felt there was a great need for a program
like this is because over the last 10 to 15 years there have
been an incredible number of changes in neonatal care,
particularly in new technologies and medications. The limit of
viability for premature infants has fallen to 23 weeks, which
is just over half the normal gestation period. These children
stay a long time in the hospital and leave with a lot of
ongoing medical problems after they're discharged.

"Luckily, most of the problems they leave with, if properly
monitored and taken care of with medications adjusted as they
grow, can resolve over the first year of life. These babies are
medically very fragile and at high risk of needing to be
re-hospitalized, with the risk of infection and also
developmental problems if they don't get proper
early-intervention services."

"The major problems they leave the hospital with are
respiratory problems, what we call chronic lung disease. This
is caused by being born with very premature lungs and being on
a respirator for a period of time. Some of the kids go home on
oxygen, so this is a problem for a while.

"Other problems are with growth and nutrition, and we have
developed many different formulas to meet the caloric needs of
these children. They also have problems with a condition called
gastroesophageal reflux, where they spit up a lot, which can be
dangerous to them, because they're just not mature enough to
handle the process of spitting up all the time like normal,
full-term babies can. Some of them have sustained various types
of brain injury and can have significant developmental
problems, as well."

The program, called "Post-discharge Care of High-risk
Infants," is now in its second year. Goldstein and other
experts conduct full-day and half-day regional workshops for
participants, usually pediatricians and other community
child-care providers, including speech, occupational and
physical therapists, social workers, nutritionists and other
specialists. She says the endowment's funding support has been
critical in providing the child-care interventionists with some
salary support for non-clinical hours.

She also notes that these children sometimes live hours away
from the closest tertiary-care medical center with a follow-up
clinic, so the role of community providers is extremely
important.

"They're going out weekly to see these children in their
homes to provide therapy, and they're the ones who see the
children much more often than the well-child care providers.
They're the ones who can notice from week to week if an infant
doesn't seem to be growing, if their color doesn't look right,
if they're getting a lot of colds or seem to be breathing fast
after therapy sessions, which could be a sign of asthma.

"By teaching them some of the basics of the medical problems
these kids are leaving with, by their being able to recognize
what medications are for what problem, why a child might have
been sent home on a monitor, how long a child might need to be
on oxygen, they can become advocates for improved health
outcomes for these children.

"I don't think they've ever really thought of themselves in
this way, and we try to emphasize how important they are, not
just in providing the therapy that they specifically were
trained to deliver but also overall in helping to look out for
these kids."

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